Most information and support needs among survivors of thyroid cancer are unmet, according to a large online survey reported in the June issue of Thyroid.

“This study shows that there is still a lot of work to be done meeting the information and support needs of patients with thyroid cancer,” said coauthor Melanie Goldfarb, MD, Assistant Professor of Surgery, John Wayne Cancer Institute at Providence St. John’s Health Center, Santa Monica, California.

“Most patients express a strong desire for receiving information and support regarding medical and physical matters, practical issues, and emotional and psychological concerns at the time of thyroid cancer diagnosis. However, most of these information and support needs are unmet with <50% of patients recalling receiving information regarding long-term and health effects after treatment, or any information on practical matters or support for emotional/psychological concerns,” Dr. Goldfarb said.

Study Involved 2,000 Survivors of Thyroid Cancer
The researchers analyzed responses from 2,000 survivors of thyroid cancer who completed an online survey assessing the importance of and recollection of receiving care for the following 3 areas of care: medical/physical issues, practical matters, and emotional/psychological concerns. A majority of the respondents were female (88.6%), white (91.1%), and underwent total thyroidectomy (95.8%) and radioiodine therapy (80.6%).

Less Than Half of Patients Remember Receiving Information or Support
While a majority of respondents reported a strong desire for information and support on the surveyed topics, less than 50% of patients recalled receiving information regarding long-term and health effects after treatment, or any practical matter or emotional/psychological concern. The following are a sample of outcomes:

Female gender, younger age, and survivorship time were significant predictors for recollecting having received information and support for the 3 areas of care studied, according to multivariate analysis that controlled for treatment and other demographic variables (P=0.001 or <0.001)

How Can Clinicians Better Support Patients with Thyroid Cancer?
“For the present, clinicians treating patients with thyroid cancer and survivors could consider implementing some of the newer global cancer initiatives such as treatment summary and survivorship care plans,” Dr. Goldfarb said. “Other options may include designing information pamphlets or other readily available resources for patients and offering referral to social work or other relevant specialists,” Dr. Goldfarb said.

“Future research should aim to conduct rigorous qualitative studies with both newly diagnosed and long-term survivors of thyroid cancer, similar to what has been done in other patients with cancer,” Dr. Goldfarb concluded.

Commentary by Rita Banach, BSc, DCS

Ms. Banach is Past-President of Thyroid Cancer Canada and co-author of journal studies, articles, and various patient-directed publications on thyroid cancer. She has been providing peer-support to patients with thyroid cancer for 15 years.

The Morley-Goldfarb study is one in a series of recent studies reaffirming that patients with thyroid cancer have substantial short and long-term unmet informational and emotional support needs. These studies quantify what is already known by peer-lead thyroid cancer patient support groups, such as ThyCa (USA), Thyroid Cancer Canada (Canada), Vivre sans Thyroϊde (France)—groups formed to offer exactly these supports lacking from other sources.

Studies by Bresner et al,1 Buchmann et al,2 and Gallop et al3 found that patients with thyroid cancer have as much or more cancer-related worry, anxiety, and diminished quality of life as do patients with other forms of cancer. Patients report worry about recurrence, regardless of their perceived or actual stage of disease. As well, there are negative consequences associated with cognitive functioning, energy levels, and ability to work. Patients report impacts on their emotional lives and relationships.

What causes this level of distress, especially in light of the overall excellent prognoses associated with the disease? At least 2 studies have found that patients are adversely impacted by the lack of information provided pre- and post diagnosis. Eskander et al4 suggested that lack of information offered to patients with thyroid cancer awaiting their initial surgery results in them suffering “substantial” psychological symptoms and more so than did early stage breast cancer patients in a comparative study. Similarly, Husson et al5 found that patients with thyroid cancer report receiving inadequate information about their disease, medical tests, treatment, and aftercare.

Uniquely, the Morley-Goldfarb study adds to the body of knowledge by testing specific topics of information, dividing them into 3 overall groups. Importantly, they found 75% of patients felt they had received adequate medical care and information, yet only 36.2% reported receiving practical information, and a dismal 20.9% receiving emotional support.

The time has come to implement support systems and integrate them into key junctures in patients’ journeys. These may include: counseling-support available immediately upon diagnosis, distribution of printed practical information, and referral to local peer-monitored support groups.